Azoospermia support - Part 2

[WhiskeyInTheJar33]

@2022ttc
@Ljp2022
@lemons44
@IslaO
@Carla2601
@TheFanciestPants
@HoustG
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@Annies1992
@Lily1994

As the old thread is almost full, I thought I'd start up a part 2 so that we can all continue our journeys together!
Apologies if I have missed anyone x

Hi all, firstly thank you for the reminder of supplements! I totally forgot I should be adding those in, so going to get on that.

Just had my appointment through for UCLH, and it’s for October?! Going to call the clinic this week and see if I should do any private tests in advance to get that pushed along. The appointment woman was lovely and said just keep calling for cancellations. @jaspercats your breakdown was very useful so I’m going to see what the steps are too, my letter says ‘Gynaecology - Fertility’ so hoping like you I can get some parts done in advance. Did you find it useful?

@Bran90 no I’ve not heard of that either.

Hiya everyone, apologies I've been AWOL! Last week was such a whirlwind and then it was my birthday on Mother's day ( some cruel joke that), so my Husband had booked us a little weekend away which was much needed really. I pretty much stayed off all social media to keep myself a little bit of breathing space for the rest of the week.

After egg collection on the Friday I started to feel a sore and bloated on the Sunday, was sore to turn over in bed, walking felt hard as well. My pjs didn't even fit! I must have drank about 5L of electrolytes daily and it must have worked as I actually started to feel better by Tuesday. Had a fresh transfer on Wednesday and have 3 others in the freezer- my numbers went from 17 collected, 14 mature, 8 fertilised, 4 blastocyst. The transfer process was so surreal, the worst bit was having a very full bladder. Feel absolutely fine now, just a pin in the bum having to do the progesterone pessaries.

Hope everyone else is doing okay, @WhiskeyInTheJar33 Hope you have recovered from OHSS, I felt so rubbish just for those few days, can't even imagine how you must have felt and how poorly you were!

Thank you @lemons44 @jaspercats @TheFanciestPants @Disco24 for your kind words and support, it really means so much!

Hey everyone, I hope you don’t mind me jumping in. Firstly, I am so so grateful to have found this thread, what a lovely supportive group you are.

My story started in 2021 when we started TTC after getting married, nothing was happening so long story short DH came back as count 5 million, his second 1.6 million, his third “occasional sperm only” and 4th none at all. His bloods are all normal- genetics and hormones and USS also normal. So the doctor (and admittedly us too) were very confident it was a blockage and that they would find sperm in the PESA and TESA/TESE but they didn’t. We are heartbroken and haven’t yet had a follow up appointment. After reading all your stories etc has made me feel there is some hope with an mTESE, do you think we still have a chance? We just don’t understand how he had some and then nothing. We have booked an appointment with J Ramsay in May so hopefully he can help us. Just looking for some support and reassurance from people who know what it’s like. What an incredibly rubbish situation this is for us all 😞 Thanks for taking the time to read!

Hi @Disco24 ! Hope you are doing well. Just wanted to check, did you have an initial appointment recently and then you were booked for IVF in October? Just asking cause I think you are a step ahead of us and still trying to figure out what's next for us :)

Actually we have a little update. Yesterday we got an appointment booked for next month but they haven't told us what it is exactly for. My husband and I have the appointment at the same time (for him it says urology appointment, for me it says obstetrics appointment). My guess is that this is an initial joint appointment to assess our situation and decide whether they accept our referral (but no clue really!).

Our referrals to Gynaecology and Urology are still is shown as "Referral in review"

Has anyone had the same?

Many thanks in advance!

Hey @Blue234 so I’ve only had GP investigations so far (ultrasound 3 months ago and hormone tests 12 months ago but that was for another thing). My partner has completed his NHS journey as he was seen by Urology at UCLH whereby we’ve found out he has a Y chromosome deletion so our only route is donor.

I'm under the impression then that my appointment is the first one with the hospital, and not the start of my IVF as it could be IUI we require. But I’ve emailed to confirm as I have no idea what stage we’re at. I just want a timeline!

Are both your appointments at the hospital from a referral from your GP? The NHS app states referral complete for me, and then I received the date in a letter x

Hi @Disco24 thanks your your prompt response :) I guess your case is a bit different as they already know you are going via the sperm donor route. In our case as @jaspercats explained to me last week, we still need to discus what would be our source (and maybe this is the reason for our appointment). So looks like we are quite behind you in the process :)

Just to give you an overview, we have completed all checks privately for both of us and we have confirmed now that with have non obstructive azoospermia, Genetics test were ok so we were told we have unexplained NOA and we are planning to have MTESE done.

While we were awaiting for the private test results, as soon as we got the first sperm test with zero count we approached our GPs. For me, they have repeated a number of blood tests and for my husband they repeated the sperm test which came back again zero count...

Then the GP referred us both to fertility unit in Royal Berkshire hospital and we can see in the nhs app that our referral is under review.

However, yesterday we got notified of an appointment at the fertility unit for both of us next month but we dont have any further information.

In any case, we are quite happy at least we have an appointment sooner than expected so hopefully things will move on somehow!

Will keep you all posted in case it helps anyone on the same journey :)

Thanks for sharing your journey @Blue234 . It sounds like things are moving swiftly which is wonderful!

My partners first appointment at the hospital included all tests redone. So he had a physical check, hormone test, genetics test and ultrasound. Even though he’d done them privately, they wanted them in their system done by them. It sped us up getting to that point so was still worth it. If it helps to know what to expect with your other half.

Do let me know what happens at your first appointment as I think mine will be the same xx

Hi everyone,

Firstly, thank you to you all for being so open and honest about your journeys. I came across this thread last year and it’s been a huge comfort to me. I’ve also learned a lot, which has helped my husband and I navigate these past few months. Congrats to the azoo babies & pregnancies as well! Lovely to see some success stories.

Our story:

As soon as we got married in September 2022, I came off the pill and we started TTC. I had been on the pill since I was 16 so I had been on it non-stop for 13 years!! Something I look back on now and think “why on earth did I not have a break from it?” but I guess when you aren’t TTC and actively trying to avoid getting pregnant, it feels like the sensible thing to do. Anyway, it took almost 60 days for my first period to arrive. As you can imagine, I spent half of this time convinced I was pregnant because I had assumed I’d get a period around day 28 as I’d read that was pretty standard. Fast forward on 8 months, my cycles were super long and irregular and I wasn’t so sure I was ovulating every cycle either so I went to see my GP and she referred me for the standard day 3 and day 21 blood tests. As you can imagine, it was bloody difficult trying to time these so it took me a few attempts but alas, my results actually came back ok. My husband then got sent to do his first SA and when we got the result it came back with 0 sperm. This obviously hit like a tonne of bricks and my poor OH was devastated. I’m not quite sure I believed it. Either that or I was in denial and still sure the issue was with me. Fast forward 3 months, the next SA actually shown half a million sperm!! Though none were motile. Anyway, I had more blood tests and a HyCoSy to get through and we were eventually referred to the fertility clinic. I did say to the gynaecologist, shouldn’t my husband be having more tests at this stage but they said they had to do all checks on me first. At our first appointment with the fertility clinic, my OH had to have his hormone blood tests, a scan and also his genetic blood tests. Annoyingly his genetic blood tests somehow went missing so we had to repeat this stage which probably delayed us by about 3 months.

OH results:
Testosterone: 12.90 nmol/L – told this was within the normal range
FSH: 25 IU/L – higher than normal
LH: 7.2 IU/L – not sure where this sits in the range?
Scan: Small varicocele but they aren’t sure it’s the main issue (I think on the NHS, they haven’t seen enough evidence that removing these actually helps so we’re keen to get a second opinion on this)
They have concluded that they think it’s NOA due to FSH levels being high

We’ve had our IVF funding application processed and accepted but now we’re in the waiting game for my OH to finally have an appointment with the andrology department at Kings. I called the receptionist yesterday to push her for guidance on timelines and she said we’re probably looking at September?! Is that normal? From the more recent posts on this thread, it seems like it might be? Anyway, we had already booked an appointment with Jonathan Ramsey for end of April because we’ve heard such good things about him and wanted a second opinion. I guess we will have to make a decision whether to do everything on my OH’s side privately and then do IVF on the NHS or to see what Jonathan Ramsey says and then maybe wait it out for our appointment with Kings.

The irony of it all is that after 18 months of TTC, with male fertility factors at play, we still haven’t managed to see an expert in the field – only gynaecologists!

A few questions for you all:

• Do you think those waiting times for andrology appointment is normal?
• Are we ok going privately for male fertility side but using NHS funded IVF?
• Will Jonathan Ramsey request a SA from my OH on the day?
• It’s been almost 6 months since the last SA and my OH has basically stopped drinking, eating really well, on all the recommended vitamins, wearing baggy grandad boxers haha. So I’m intrigued if that’s helped and maybe we don’t need to go down the SSR route? What’s everyone’s thoughts on this?

Apologies for the mammoth post!! I have so many questions and it’s just so nice to be able to talk about this openly with others who are going through a similar thing.

Hi @StarJasmine93 welcome 🙂
Sorry to hear you've had a difficult journey so far and a lot of waiting.
To have half a million sperm in his second sample sounds really positive, although obviously not what it should be. But at least there is something there to work with if that makes sense?! It would be interesting to see what another SA would show now, especially after the supplements and lifestyle changes. I'd imagine Dr ramsay would want to do a repeat.

We were told we need to see andrology and also have genetic counselling (OH has y deletion) - apparently we were referred in June last year but still have heard nothing. He has a urology appointment for May although we aren't sure if this is just the gp referral he had for a hydrocele, and whether they will even do anything about the fertility side of things....

Would also be keen to understand what private consultations or treatments would rule out eligibility for nhs ivf! OH has managed to get agreement via private health insurance to see Dr pippa for a hydrocele. I don't think that should be seen as fertility related when considering ivf funding should it? He's also trying to see if he can get genetic counselling privately as the wait for nhs just seems ridiculous. We're hoping this wouldn't cause issue with ivf funding as still hoping to be able to go down that route, depending on my next fsh result 🙏

@Disco24 thanks a lot for letting me know what to expect from my husbands side. I really have the hope we do not have to repeat his tests as they were just done one month ago and we actually spent quite a lot of money just to have a diagnosis ASAP! But I wouldn't be surprised though that they want to have it in their system as you said. So let's see, fingers crossed!

@StarJasmine93 welcome!

Re- Waiting times for andrologist -> I believe it depends on your area, but what we have heard is that waiting times are crazy. That's why we started checking privately and trying to push NHS in parallel. We have a chat last week with DR Pippa and she actually told us that if we are aiming for a MTESE via NHS it might take easily 1 year just to have the first appointment with andrology in London! Again this depends on your area, so we are waiting for our first fertility appointment to see if they give us an estimation and then see if we go private or wait for NHS

Re- Are we ok going privately for male fertility side but using NHS funded IVF? -> Also we discussed this with DR Pippa and she told us that in our case, we can do MTESE privately and still be eligible for NHS funded IVF. I believe your situation might be slightly different, but just thought sharing in case it helps

@pigbabe Glad you are recovering well. Good luck with your transfer!

@Appl3Pips Sorry you find yourself here. Mr Ramsey put my DP on Anastrozole, so I wonder if this is an option for your DH? Have you considered sperm mapping prior to microTESE? I don't know too much about this myself, but its something on our list to explore if we need further sperm.

@Blue234 At my NHS clinic, they have a "combined clinic". So DP and I attended together for the same appointment. There was a urologist and gynaecologist present for a joint assessment. I believe some clinics do this particularly with MFI.

@StarJasmine93 Welcome. I can't comment on time frames but you can have private investigations alongside your NHS treatment. We saw Mr Ramsey and he is all for this. We saw him whilst we were waiting for our NHS appointment and was quite keen to do as much as he could to get us in the best possible position for when the NHS got round to us! Mr Ramsey highly recommends Gordon Muir who is the Andrologist at Kings Hospital (he thought is I would be referred to Kings for IVF but they do not cover my CCG unfortunately).

Update from me...
I am recovering from OHSS and starting to feel better. Just waiting to have withdrawal bleed now and then can start preparing for FET. Don't know whether they will try this cycle or wait for another cycle to give my body longer to recover.

Hi @StarJasmine93 sorry you find yourself here, but I'm glad it's been some comfort having this to read. Thanks for sharing your story, I can absolutely resonate with those first few months off contraception thinking not having my period yet meant it had happened so soon. I feel so naive sometimes looking back at that time!

I'm not sure how much the private elements can effect funding but my OH had blood and sample tests privately and that didn't impact any Andrology appointments on the NHS.

Regarding 'Do you think those waiting times for andrology appointment is normal?' - it's honestly all so different. Some people wait a few weeks, others months. For us, my OH Andrology referral was sent in August, he was seen in October and we got results in January. But my referral was done in January, and it doesn't look like I'll be seen until October. And that's us both at UCLH.

Thank you everyone for your replies! ❤

@Magix86 Yes, the fact that the second sample had sperm was great! I just hope that it's a sign we may not need SSR or at the very least we have something to work with as you say. Have you seen Mr Ramsey personally?

That's crazy you still haven't heard anything since June last year!! The waiting part is the hardest I think. It drives me crazy. I'm not the most patient person so that doesn't help. @WhiskeyInTheJar33 's message back to me has a bit of information around private funding and nhs funding that might help with your questions around it too.

@WhiskeyInTheJar33 thanks for your information, it's really helpful and encourgaing to hear that Mr Ramsey highly recommends someone from Kings. I'm just desperate to get a date from Kings so we know what we're working with and if it's something we'll wait for if we go private for anything my OH needs like SSR etc.

Sorry to hear you've been suffering with OHSS. I read in the BFN book that this only affects 2% of patients within IVF but I really think it must be higher as I've heard so many women suffer from it. Good to hear you are recovering though - how are you feeling? Exciting you'll have your FET soon though 🙏

@Blue234 1 year for an MTESE?! Oh my goodness. I couldn't wait that long. I think if thats the route we end up having to go down and we were faced with anything like that kind of wait time, I'll push to go private! I've just re-read your messages above to understand your journey so far... it may not be the same but our first appointment with the fertility clinic was more of a summary meeting of all results to date and then a plan for the next steps. It sounds like you are much more progressed than we were when we got to this stage so our next steps was hormone tests, scan & genetics for OH. All of my tests had been done. Now you know it's NOA & MTESE is the next step, your appointment might be a matter of getting the ball rolling on applying for NHS IVF and discuss options etc. It seems like the journey to get to where we all want to go can differ quite a bit but thought I'd let you know what our experience was with that appointment.

@Disco24 Thanks for your thoughts on the timings. Seems to differ so much by area! I guess I'll have to try and be patient until we get our date with Kings. At least we have Mr Ramsey in the meantime and as you've outlined, this shouldn't impact the funding we have for our NHS IVF.

I saw that you are going down the donor route and now just waiting for a timeline for your IVF. If you don't mind me asking, how long has your journey been to this point? Were you and OH always open to using a donor? It's something my husband and I have talked about but not in great detail yet. (Don't feel like you need to answer these questions!! Just trying to learn from other people's experiences) xx

Hey @StarJasmine93 I don't mind answering at all! I think it's good to share. Get ready for an essay sorry 😅

So we started TTC in January 2023 when I came off the implant. 8 weeks after it coming out I still hadn't restarted my period so the GP sent me for hormone tests to see if everything was okay (which it was and I came on a week or so later). My partner at this point thought he should pay private and do his due diligence if I was getting blood tests and that's when we found out his sperm count was 0. He then did a follow up blood test private which didn't have any issues so we contacted his GP to do some more investigation.

During this time we discussed all options as I like to have all the facts, so donor was never off the table. Once we had the final results in January from andrology at the hospital which meant donor or adoption were our only options, my OH was in no doubt that we did donor as he wanted us to experience pregnancy and believes that journey will also help his involvement.

It's worth saying my partner has close family who are adopted so our understanding of family has always been more than just DNA, which has definitely helped our acceptance. This doesn't go without saying it's still painful, and some days are worse, but these are the cards we've been dealt ❤

Hi @StarJasmine93 sorry if everyone has already answered your questions but I havent had a chance to catch up with all the messages but for us we were told it could be a 8 month or more wait for a referral to guys and St Thomas but it's actually only been about 2 months so I think it varies. I was very shocked when the appointment came through. Obviously we may have to then have a wait for MTESE as this is just an initial appointment.

With regards to funding. SSR and IVF on the NHS come from different budgets. SSR is funded by NHS England whereas IVF is from your local CCG so we have been told we can do the SSR privately and then IVF on the NHS if we want to. If sperm is retrieved obviously it's yours so you can courier it to wherever you need it to be (obviously this will probably be at an extra cost).

It's good you already have IVF funding approved. You have got me thinking about our IVF funding though as we haven't been asked to fill in anything for that side of it so maybe I need to try and find out what happens with that. Did the fertility clinic do that for you?

I do feel like this journey should not be so complicated for us all to natigate, it just adds to the stress of it all

@Magix86 thanks for your suppliment info. I'm going to check out the wheatgrass and upping my omega3. Although wheatgrass smoothie doesn't sound amazing! Haha

@Disco24it was definitely useful getting as much done as possible before. We actually aligned our appointment up with Dr Ramsay for 2 days after our second fertility appointment so we knew we would have everything including genetics ready to talk to him about. This also links in with what @StarJasmine93 asked about whether Dr Ramsay would request a SA at the appointment. The answer is for us was yes! He likes to have a total of 3 and needs a recent one to discuss on the day. We predicted this so got my husband to have one on the Monday (appointment was on the Friday). When we asked the GP to order it we actually spoke to the fertility clinic and said we need the results by the Friday for our appointment and they rang my husband on the Thuraday with the results and emailed them over. When we turned up on the Friday to Dr Ramsays clinic, the first thing the receptionist said was "Dr Ramsay would like you to do a SA today". We responded with "he had one done on monday" then showed her the copy of the results. She told Dr Ramsay and he was totally fine with it and even said well done to us for being so organised. A SA at his clinic is £185 I think so we felt quite pleased with ourselves for saving this (although in the grand scheme of things what's another £185 when it comes to fertility treatment).

Welcome @Appl3Pips and sorry you find yourself here. I would like to say that as your husband has had sperm in the ejaculate at some point then surely that's a good sign?! Someone else will be able to advise you I'm sure.

@Disco24 I totally agree with you that DNA isn't everything! I come from a blended family and my uncle is adopted. I'd love to follow your story! Have you started looking into donor selection yet?

@Sammysquidge that is all so so helpful! I didn't know about the different budgets so thanks for clarifying that.

Regarding IVF funding, so we got our IVF referral from our second fertility clinic appointment which was where we got the results from my OH's hormone blood tests. (We should have got genetics then too but they somehow went missing so we had to repeat them). From the referral we got sent a load of paperwork about 3 weeks later which we filled out and returned. Then about 1-2 weeks after this, they called us with an appointment for our first IVF consultation. This was 5 weeks later and usually this would be us starting on our IVF journey but of course we still need to explore my OH's fertility and how we get viable sperm so instead we just got the genetics results at that appointment. Hope this helps you?!

@jaspercats that's actually really helpful to know!! Can I ask how your OH went about getting an SA done via GP and through NHS? My husband has already had 2 through the NHS. Can you just request one or? Also was it the London clinic you saw Mr Ramsey?

@Disco24 @Sammysquidge @jaspercats

Sorry for some reason it didn't tag you in my previous post

@StarJasmine93 thank you for sharing that breakdown of timings, that's what I'm struggling with at the moment, not having that information. So was your experience around 12 weeks from first fertility appointment to what should have been your first IVF?

Likewise, it's nice to share similar experiences. We've had a little look at donor selection, but with our first appointment at Gynaecology not until October it feels a little premature.

@Disco24

So we got referred to the fertility clinic when my husband had done both his samples.

• Referral in October
• 1st fertility appointment 15th of November where they requested my husband go to have hormone blood tests, genetic blood tests & a scan
• 2nd fertility appointment 15th of January. We went through results from scan & hormone blood tests and the Dr said he'd imagine based on those, that it was NOA. He sent us away for genetics again due to results going missing
• Referral for IVF happened on the 15th of January
• By the end of Jan/first week of Feb we received all the paperwork needed and filled it out immediately
• 1 - 2 weeks later we got a call to say funding was approved and they had booked us in for an appointment on the 5th of March
• 5th of March - IVF consultation meeting but ended up with us just getting the genetics test results (all clear) and the Dr referring us for andrology at Kings. Had it been a female related fertility challenge, I belive the IVF process would have began at this meeting.

They told us that once we've had our andrology appointment and if needed, had the MTESE, then we call the clinic back up and book an appointment to start IVF. I asked if there would be a waiting list but they told me no, it would be a matter of a few weeks once I make that call.

It's worth maybe saying that our clinic is Kingston Hospital but for the andrology part, we've been referred to Kings. Unsure of timelines for Kings yet.

Hope that helps?

Thank you @StarJasmine93 thats really helpful to know. We have had so many hiccups along the way with our referrals going to incorrect places etc that I'm constantly worried they may have made another mistake along the way. It may be different for us as I just presumed we wouldn't apply for IVF funding until we know if the sperm retrieval works and we know which route we are taking. But knowing this now at least I can ask about it at our appointment in April

@Sammysquidge so I found an NHS medical paper online all around SSR and to have that done via the NHS, you apparently need to have your IVF funding in place. I queried this with my gynaecologist and he confirmed that is correct. Seems a bit back to front but that's how it works I think.

@StarJasmine93 Oh wow thank you I will definately contact them to check this then before hand in that case as I wouldn't want that to hold anything up!

Hope everyone is doing OK! I must reply to messages sooner lol.
@Blue234 1 year for an mtese on the NHS sounds unbearable! It does sound like it might vary but if that's the case for us I think we will go privately. So so helpful to know about the funding for SSR vs IVF so thank you @Sammysquidge 😊
@StarJasmine93 no we haven't seen Mr Ramsey but I've read sooo much about him on mumsnet lol. Your process seems to have all gone really quickly from your first consultation! We finally have the details for the genetic counselling so I can at least chase and hope for cancellations to come up sooner, but they have said its likely to be August.
@jaspercats let me know how the wheatgrass goes!! I just got the powder and add it to a banana or blueberry smoothie so it actually tastes great haha. I think you can buy fresh and frozen wheatgrass so they probably don't taste too good 🙃

In the meantime, I'm having my second acupuncture session on Monday and still on the daily wheatgrass and omega 3 to try and reduce my fsh. I know it might take more time but going to have another fsh test this month plus pay for my amh level too.
Day 1 of my cycle is due to arrive on a Friday unfortunately so its looking like my day 2 bloods will either have to be done on day 1 or day 4! I went on day 3 last month and fsh was high at 9.2....
Does anyone know what would be better for hopefully a lower number, day 1 or day 4? I desperately need it to be below 9 lol for nhs referral to go ahead